Our little boy, Juan Pablo, the youngest of four had just turned two. His light ashy brown hair was sticking straight up, he was beginning to say a couple of words and loved to carry his sippy cup everywhere he went. During his wellness pediatric check-up in October of 2018, I asked his pediatrician to check Juan Pablo’s iron levels due to his lack of eating veggies. After a tiny finger poke, the iron levels were low, and she decided it was best to have a complete blood count. The next day, I received a concerned call from the doctor because Juan Pablo’s platelet levels were very low. Immediately the following morning we were seeing a hematologist at Children’s Hospital. After thorough blood work, it was thought that he could have Immune Thrombocytopenia (ITP), a disorder that can lead to easy or excessive bruising and bleeding. This condition in children sometimes resolves itself within a few months. Since Juan Pablo was not showing any symptoms other than some bruising, he was being seen monthly to continue to be monitored. On Saturday, February 16, 2019, Juan
Pablo woke up with a slight fever. As the day went on his fever rose, and he began to look very weak. He was rushed to the Children’s ER. Juan Pablo’s temperature was 104.1. He had been diagnosed with strep. Because he looked so weak, they gave him two steroid shots and sent us home with antibiotics.
Juan Pablo did get a little better with the amoxicillin but as soon as the medicine was over, he started to get sick again. Week after week he started to eat less. One day he woke up with a stomach bug, vomiting, and unable to hold anything down. Days later, he began to complain about walking. He would constantly wake up in the middle of the night complaining about his hips and wanting to be held almost all day long.
Less than a month later, he was back at Urgent Care with a cause for his symptoms of a virus. Despite caring for him over the long weekend, giving him Tylenol every 5-6 hours, pushing down Pedialyte and Pediasure with a syringe into his mouth, the days were rough. He was uncomfortable, had no appetite, and was clearly in pain.
Monday came, and we were back at the pediatrician’s office. Her straight face said it all. She knew it was serious and suggested that Juan Pablo have the bone marrow biopsy. The biopsy was performed on Tuesday. On Wednesday the doctor confirmed that our beloved son Juan Pablo (our Pablito) of only two years old had cancer. He was diagnosed with Acute Myeloid Leukemia (AML) on March 13, 2019. (AML is acute myeloid leukemia (AML), a rare form of cancer that affects the bone marrow and blood.)
Plans were made to have Juan Pablo admitted to the hospital immediately. From not knowing an ounce about leukemia or cancer, we put on our parent-student hats to be the best advocates we could possibly be for our son. On we went, with a needle in our baby’s hand, step-by-step moving from the clinic side to the inpatient hospital side.
Juan Pablo’s AML treatment in the best-case scenario would consist of five rounds of chemotherapy, two inductions and three intensifications, and last 6-8 months. The following day he had his central venous line placed, his first lumbar puncture, and first chemo. Each round would wipe his bad and good blood cells and consisted of long hospital stays — 4-5 weeks. He received 14 blood and 20 platelet transfusions, four lumbar punctures, echocardiograms, many tests, countless blood draws, oral medication fights, CT scans, MRI scans, sustained not needing a nutrition g-tube, eye and nasal exams, weekly dressing changes, endured appendicitis, mucositis, TPN nutrition, eye sensitivity for four days of darkness and a total of 153 days and nights in the hospital. Juan Pablo did amazingly well with the treatment. His team was amazed that after the very first round of chemo, induction one, he was in remission. His test results showed 0.000 cancer cells! He overcame and fought cancer hard but still had to go through the full five rounds of chemo. He fought like a champion kid, like a kid with God on his side, like a kid who could do anything. He truly is our hero. Despite the hospital pole, he still ran the hallways, played in the playroom, converted his hospital room to our home full of toys, snacks, and cartoons running on TV. He captivated the nurses’ hearts with his flirty dimples and loud play. Like Dr. Halyko would say, “he’s rocking it!”. On November 12, 2019, we walked out of the H.O.T. unit with large smiles on our faces.
After nine long months, in December of 2019, Juan Pablo finally had his central venous lines removed. “Yeah, no more tubbies!” we would celebrate. On December 31, 2019, we rang the bell for the end of treatment celebration. A perfect day to ring in the new year and the bell. Of course, it was difficult, but he sure made it easy on us. He’s our amazing son who changed us, who made us appreciate all the little things, to be better, to be aware of childhood cancer, to appreciate the innocence and love of children through sickness or health, to give more of us, and to live every moment with kindness and love. In his little two- and three-year-old self, he has opened the hearts of many to prayer and to God. Today. Juan Pablo is a healthy and vibrant four-year-old. He’s a blessing who inspires us every day.
Because of him, our devastation transformed into inspiration and we try to do our little part to help the childhood cancer community through Juan Pablo’s Inspire Awesomeness.
Hope session by Missy Scharer Photography | Facebook | Instagram